How can dementia change relationships?

In the previous step we heard from Gill how her relationship with her husband has changed since he developed dementia with Lewy bodies. In this article, we discuss some of the reasons that relationships change, and some ways in which couples can be supported.

This article is written by Dr Susie Henley, Clinical Psychologist (Dementia Research Centre, UCL Institute of Neurology)

Quality of relationships

We know from what patients and families tell us that a dementia diagnosis can have a huge impact on relationships in the family, especially for couples. Research backs this up, and also shows that there is a tendency for the “carer” partner to experience a bigger drop in the quality of their relationship, than the person with dementia does – so both perceive the change in relationship slightly differently as well. There are likely to be many reasons for this: some are to do with the symptoms of dementia, for example couples sometimes say they can’t chat about family events any more if one of them can’t remember the details; or the carer can’t ask the person with dementia for advice any more because they don’t understand the issues.

A shift in roles

Sometimes the changes are more to do with the shift in family roles that can happen, for example the carer partner becoming tired and stressed as they take on more day-to-day responsibilities that the other person used to do, and the person with dementia being aware that their role has changed and that they don’t hold the same place in the family any more. A very common theme is that the person with dementia doesn’t seem to be the same any more, and it is understandable that this sense of loss can have a huge impact on the relationship.

Counselling and support

There are several places to go to for support if this happens. Some couples find talking to a counsellor helpful and there are organisations that specialise in working with couples, such as Relate (nationwide), and Tavistock Relationships (in London). The TR has recently piloted a talking therapy specifically designed to help couples where one of the couple has dementia. It can be helpful to have a third person to listen to both points of view and help balance things a bit more. However there will be situations where the person with dementia may not be able to understand or take part in counselling. In this case sometimes the carer partner may still find it helpful to talk to a professional about how they are feeling.

Talking things through

Many carers recognise feelings like anger, frustration and resentment at their partner and then feel guilty for having these feelings. Being able to tell someone outside the family that they feel like this, and talking through ideas for managing these feelings can be very helpful. Finding a carers’ group can also be useful, particularly so that people can hear from others that they are not the only ones to be going through this experience.

Other relationships

It is important to remember that a couple is just one relationship within the family. Dementia can affect all sorts of relationships, including with children, siblings and older parents. There is much less research about this but there are some resources, particularly aimed at children, to help them understand dementia and how it might affect their parent or grandparent. Understandably family members can try to “protect” each other from how they are feeling, but in general research shows that if families are able to talk about the dementia with each other this can help them cope better.

Having read about these issues, how much do they reflect your experience of changing relationships, and how do you think we can all support couples and families as they deal with the challenges that a diagnosis of dementia brings?